Big Brain Data: On the Responsible Use of Brain Data from Clinical and Consumer-Directed Neurotechnological Devices

Neuroethics 14 (1):83-98 (2021)

Abstract

The focus of this paper are the ethical, legal and social challenges for ensuring the responsible use of “big brain data”—the recording, collection and analysis of individuals’ brain data on a large scale with clinical and consumer-directed neurotechnological devices. First, I highlight the benefits of big data and machine learning analytics in neuroscience for basic and translational research. Then, I describe some of the technological, social and psychological barriers for securing brain data from unwarranted access. In this context, I then examine ways in which safeguards at the hardware and software level, as well as increasing “data literacy” in society, may enhance the security of neurotechnological devices and protect the privacy of personal brain data. Regarding ethical and legal ramifications of big brain data, I first discuss effects on the autonomy, the sense of agency and authenticity, as well as the self that may result from the interaction between users and intelligent, particularly closed-loop, neurotechnological devices. I then discuss the impact of the “datafication” in basic and clinical neuroscience research on the just distribution of resources and access to these transformative technologies. In the legal realm, I examine possible legal consequences that arises from the increasing abilities to decode brain states and their corresponding subjective phenomenological experiences on the hitherto inaccessible privacy of these information. Finally, I discuss the implications of big brain data for national and international regulatory policies and models of good data governance.

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Philipp Kellmeyer
Albert Ludwigs Universität Freiburg

Citations of this work

Dimensions of Ethical Direct-to-Consumer Neurotechnologies.Karola V. Kreitmair - 2019 - American Journal of Bioethics Neuroscience 10 (4):152-166.
Ethischer Diskurs zu Epigenetik und Genomeditierung: die Gefahr eines (epi-)genetischen Determinismus und naturwissenschaftlich strittiger Grundannahmen.Karla Karoline Sonne Kalinka Alex & Eva C. Winkler - 2021 - In Boris Fehse, Ferdinand Hucho, Sina Bartfeld, Stephan Clemens, Tobias Erb, Heiner Fangerau, Jürgen Hampel, Martin Korte, Lilian Marx-Stölting, Stefan Mundlos, Angela Osterheider, Anja Pichl, Jens Reich, Hannah Schickl, Silke Schicktanz, Jochen Taupitz, Jörn Walter, Eva Winkler & Martin Zenke (eds.), Fünfter Gentechnologiebericht: Sachstand und Perspektiven für Forschung und Anwendung. Baden-Baden, Deutschland.: Nomos. DOI: 10.5771/9783748927242. pp. 299-323.

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